Welcome to the redesigned epilepsy.com
It is now easier and faster than ever to access news, articles and community content. With less clutter and an improved navigation system, your favorite content is now only a click away.
The new features include:
Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAYWhen Epilepsy Bereaved (EB) started to make an impact upon the epilepsy world Brainwave was trying to come to terms with the deaths of several students from its training programme who had died in similar circumstances. EB brought the answer to the question of how they had died and this knowledge energised the organisation into action on SUDEP. This knowledge and suggested action plan were not universally accepted throughout the organisation and the first battle was to gain acceptance of the need for action. The first steps decided on were as follows:
Publishing the SUDEP article proved a seminal point in the development of Brainwave’s initial strategy. Many members responded to it in varying ways, many of them negative and angry, despite great care having been taken writing the article. Nonetheless, it opened the debate on epilepsy death, providing the platform to put the other steps in place.
In May 1999, Brainwave got direct access to the Minister for Health for the first time and SUDEP was one of only four topics raised with him. It was next decided to hold a cross-border seminar on epilepsy deaths, combining with Epilepsy Bereaved and Epilepsy Action, Northern Ireland. The meeting was a success drawing families from all over Ireland. However, the Brainwave staff found it hugely draining emotionally.
In 2000 a meeting was held in Dublin for Brainwave bereaved families. This was a successful but small meeting. By this time, the JEC was at an advanced stage of preparations for the National Sentinel Clinical Audit of Epilepsy-Related Deaths (Hanna 2002) in the UK with Epilepsy Bereaved leading the project for the JEC. The publication of the audit, in time for National Epilepsy Week (NEW) in May 2002, brought the issue of SUDEP and other epilepsy deaths to major prominence in the UK. Brainwave made SUDEP the focus of NEW with events held all around the country. Additional training in SUDEP information, advice, and support was arranged for the charity’s staff prior to NEW. In Dublin, the major event was a special ‘Call to Action’ (on epilepsy deaths) press event. A number of prominent politicians and a good gathering of press ensured some very good publicity. The keynote speaker at this event was a young Irish neurologist working in the UK, Dr Yvonne Langan, who has done some groundbreaking research into SUDEP.
The audit findings, particularly those in relation to information for families, seizure control, and access to specialist, care led to Brainwave refining its strategy in relation to the whole area of epilepsy deaths. The following additional aims were added to the strategy:
Brainwave has had success in all these areas but they are all works in progress. Earlier this year another cross border SUDEP seminar was held and now Brainwave has decided to consider regional meetings. In addition, the concept of joint working with our two partners in the cross border events is being explored.
Since Brainwave first took action on SUDEP prevention, one further death (one too many) of a student attending our courses has taken place in the past six years. This compares very favourably to the earlier experiences but does not make us complacent and, until a cause and cure for SUDEP is found, demands our on-going attention.
Mike Glynn, CEO, Brainwave
Ireland
Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.
Welcome to the Wiki. This space is created for epilepsy.com members to share their own experiences and expertise to help refine and expand the discussion around important topics.
No members have yet contributed to this topic. If you are not yet an epilepsy.com member, register today to get started on this Wiki topic and the many other advantages of being a member. If you are a member and wish to be the first to edit this Wiki topic, please make sure to login, then click on the orange "Start Wiki" button at the top of this page. Or, learn more about Wikis.
| Title | Posted | |
|---|---|---|
| Faked seizures | Oct 3, 2009 | |
| dfarrell | ||
| I Have Epilepsy and I Hate My Life... | Aug 17, 2009 | |
| 1nevermore | ||
| Food-Triggered Siezures | Sep 25, 2009 | |
| uberzwitter | ||
| Temporal lobe surgery | Aug 16, 2009 | |
| a_mkelly2000 | ||
| Can exercise induce seizures? | Sep 11, 2009 | |
| MichaelK | ||
| terrified to get pregnant | Sep 19, 2009 | |
| linzysmith323 | ||
| Epilepsy triggers? | Aug 9, 2009 | |
| Black.Pearl | ||
| The Reasons not to consume alcohol or smoke marijuana if you have epilepsy | Jul 30, 2009 | |
| LaurenG1211 | ||
| Do seizures change characteristics over time? | Jul 25, 2009 | |
| Amazon | ||
| Gardasil, car accident, stress, PTSD, seizures? | Sep 9, 2009 | |
| sparkbird | ||
| View all Forums | ||
| Title | Posted | |
|---|---|---|
| Epileptic Seizure Monitor Alarm System | Feb 8, 2012 | |
| onemarvy | ||
| Are these normal migraine symptoms or is there something more to it? | Feb 8, 2012 | |
| xtheotherside | ||
| 5 year old worsening seizures. Pls help??? | Feb 8, 2012 | |
| TIM_C28 | ||
| Trileptal dosage | Feb 8, 2012 | |
| myejk | ||
| SEN and epilepsy | Feb 8, 2012 | |
| Kim Norris | ||
| possible non convulsive epilepticus? | Feb 7, 2012 | |
| rayraykay | ||
| Fight with the sidewalk | Feb 7, 2012 | |
| jasssmit | ||
| Focal activity followed by generalized activity but no epilepsy | Feb 7, 2012 | |
| BendyPianist | ||
| Self-Management of Medication | Feb 7, 2012 | |
| columbia.epilepsy.study | ||
| Feeling Like a Human Guinea Pig | Feb 7, 2012 | |
| christopherpaul | ||
| View all Forums | ||
| Title | Page Views | |
|---|---|---|
| my.epilepsy.com Updates | 20,610 | |
| epi_help | ||
| topamax and weight loss | 19,311 | |
| alexia mom | ||
| kepra | 19,197 | |
| brian mattingly | ||
| Possible cure for absence seizures | 16,342 | |
| pdl1 | ||
| How exactly do aura's feel | 13,990 | |
| WendyBendy | ||
| Sexual Side Effects | 13,513 | |
| George R | ||
| MEDICAL ALERT I.D.'s | 12,427 | |
| picnupthepcs | ||
| Over 40 Different Types Of Seizures - Revised | 10,405 | |
| spiz | ||
| electrical shock in head? | 10,072 | |
| Maggie | ||
| Weight Gain and Depakote | 9,005 | |
| galinda | ||
| View all Forums | ||
| Title | Posted | |
|---|---|---|
| This Isn't Ebay Folks!!!!!!!!! | Aug 7, 2009 | |
| banffgirl | ||
| Well he has arrived! | Sep 28, 2009 | |
| SassyMindy | ||
| BEEN A LONG.........PROBABLY A LONG PURGING BLOG COMING........I'M BEING FOLLOWED BY A MOONSHADOW.... | Aug 8, 2009 | |
| ROCKNROLL | ||
| A Year Since Surgery | Aug 17, 2009 | |
| SassyMindy | ||
| Ohhhhh Baby! | Sep 5, 2009 | |
| 1sassyhelper | ||
| Drum Roll..... | Jul 27, 2009 | |
| crashllama | ||
| Find insurance for Epilepsy | Oct 27, 2009 | |
| mandasuewilson | ||
| AS THE DRUG COMPANY TURNS - THE SOAP OPERA | Aug 1, 2009 | |
| banffgirl | ||
| Changing seizures..very scary | Jul 29, 2009 | |
| r_mommy2 | ||
| Quitting medication after brain operation | Aug 7, 2009 | |
| karl34 | ||
| View all Blogs | ||
| Title | Posted | |
|---|---|---|
| Epilepsy Pipeline Update Conference | Feb 8, 2012 | |
| bryan_farley | ||
| my partial complex seizures | Feb 8, 2012 | |
| Zanna1211 | ||
| The Sunday Dreads | Feb 8, 2012 | |
| johnverling | ||
| Giant Stuffed Animals For The Toddlers | Feb 8, 2012 | |
| zacharysmith | ||
| Frederick's of Hollywood Announces the "Hollywood Love Story Contest" Valentine's Day | Feb 7, 2012 | |
| cn-lightings | ||
| Seizures and medical marijuana | Feb 7, 2012 | |
| seizureprone134 | ||
| From muscle problems to seizures in 6 weeks or less | Feb 7, 2012 | |
| ArizonaAbby | ||
| Speech at Epilepsy Pipeline Update Conference -2012 | Feb 7, 2012 | |
| dayna | ||
| The Doors. | Feb 7, 2012 | |
| BowlofMush | ||
| marijuana | Feb 7, 2012 | |
| ccraven | ||
| View all Blogs | ||
| Title | Page Views | |
|---|---|---|
| my partial complex seizures | 4,402 | |
| Zanna1211 | ||
| Topomax... The Dreaded......... | 3,780 | |
| Dr Jason | ||
| Brain Zaps, tics & twitches | 3,579 | |
| JudiS | ||
| How can you tell if a sleep seizure happens? | 3,537 | |
| epl_controller | ||
| Feeling Sick | 3,308 | |
| JBJ1984 | ||
| side effects of phenobarb. | 3,211 | |
| pksmom | ||
| Tegretol XR and ANXIETY meds | 2,903 | |
| Butterflygrl | ||
| TYLENOL, AEDs & SEIZURES | 2,831 | |
| cmscribbles | ||
| Nonepileptic "Events" vs. "Seizures" | 2,710 | |
| teft | ||
| newborn seizure | 2,254 | |
| Sunny_80 | ||
| View all Blogs | ||
| Title | Posted | |
|---|---|---|
| support group for individuals w/ epilepsy | Oct 18, 2009 | |
| sunstarr_429 | ||
| Epilepsy and Movies | Sep 10, 2009 | |
| wendyspazzez | ||
| Epilepsy and Memory Loss?? | Sep 17, 2009 | |
| lindseygthatsme | ||
| EPILEPSY SUPPORT GROUP NORTH CAROLINA | Oct 12, 2009 | |
| Roxanne D | ||
| View all Groups | ||
| Title | Posted | |
|---|---|---|
| Had the worse seizure of my life last night! Complex Partial | Feb 8, 2012 | |
| jlamont | ||
| Self-Management of Medication | Feb 7, 2012 | |
| columbia.epilepsy.study | ||
| Dravet Spectrum Disorder | Feb 4, 2012 | |
| mytboy | ||
| Diving with eplilepsy | Feb 1, 2012 | |
| p59 | ||
| Moms of epileptic toddlers | Jan 24, 2012 | |
| Xaviersmom2 | ||
| Autism | Jan 15, 2012 | |
| Aaron Chan | ||
| brain surgery | Dec 26, 2011 | |
| jen020309 | ||
| People in their 20's with epilepsy | Dec 7, 2011 | |
| Mandy911 | ||
| TEAM ETP | Nov 28, 2011 | |
| krisj | ||
| 24yr old male | Sep 21, 2011 | |
| Dave24 | ||
| View all Groups | ||
| Title | Posted | |
|---|---|---|
| 36 years epilepsy and seizure free so far after op. | Jul 26, 2009 | |
| karl34 | ||
| giving humans another try ;) | Oct 27, 2009 | |
| bookworm03 | ||
| growning up | Oct 21, 2009 | |
| geenie | ||
| Epilepsy and other goodies | Jul 27, 2009 | |
| LIZARD66 | ||
| Absent Memories | Oct 29, 2009 | |
| BekiP | ||
| Journey of Epilepsy | Aug 6, 2009 | |
| Jensey84 | ||
| Silent Traumatic Epilepsy as a result of a subarachnoid hemorrhage | Aug 7, 2009 | |
| lonepearl | ||
| Our son Shawn Orkis. | Aug 9, 2009 | |
| Ron. Orkis | ||
| Epilepsy and my daughter | Aug 12, 2009 | |
| dmeitzen | ||
| Temporal lobe epilepsy | Aug 19, 2009 | |
| dawnieb82 | ||
| View all Stories | ||
| Title | Posted | |
|---|---|---|
| My Story - Still Don't Know What it Means | Feb 8, 2012 | |
| arobertshaw85 | ||
| Help me plz. I can't go on like this | Feb 6, 2012 | |
| Lindsea | ||
| For my daughter | Feb 6, 2012 | |
| britni1780 | ||
| Why can't I find out what is going on with me? | Feb 5, 2012 | |
| dgreer27 | ||
| nightime seizure | Feb 5, 2012 | |
| ishaq | ||
| my grandchild with possible panayiotopolous syndrome | Feb 5, 2012 | |
| krys | ||
| Please Read and Help | Feb 4, 2012 | |
| WALLIGAT0R | ||
| Hello. I'm new to the forum | Feb 3, 2012 | |
| Tom S. | ||
| Maxx | Feb 3, 2012 | |
| MDS2006 | ||
| Lyme Disease as a cause for seizures | Feb 1, 2012 | |
| ssidah | ||
| View all Stories | ||
| Title | Page Views | |
|---|---|---|
| Jessica Roiz | 2,412 | |
| kroiz | ||
| my story | 553 | |
| snoby | ||
| Temporal Lobe Epilepsy | 536 | |
| Always Have On Clean Underwear | 499 | |
| crashllama | ||
| my brain has died a thousand deaths........... | 470 | |
| banffgirl | ||
| Kelly's Life With Epilepsy | 467 | |
| kjcanada1979 | ||
| What My Seizures Are Like...... | 418 | |
| javaman | ||
| Nocturnal grand mal seizures (primary generalized epilepsy) | 389 | |
| karalyeva | ||
| Life......... | 371 | |
| dizzygal | ||
| My Daily Philosophy..... | 364 | |
| KatieFerguson88 | ||
| View all Stories | ||
